Hi there! For those of you whom have never heard of me before, my name is Haydee Rivera, and I am in desperate need of some emotional support and financial assistance from anyone who is able and willing to help! Have you ever found yourself stuck, trying to make a decision? Looking at what might be down each road so you could choose the best one to travel? Later, just to realize there really was no difference in the outcome. As once said, “Life is a Journey, Not a Destination”. Let me explain…

Nine years ago, I was diagnosed with a brain tumor called a Meningioma, which did not turn out to be what the doctors thought it would be in the long run. What should have been slow growing and usually just treated as a “wait & watch”, turned out to be very aggressive and fast-growing incurable tumors, causing significant permanent damage. I have a rare condition called Meningioma with NF2 mutation. Hence, despite surgeries, radiation, and a clinical trial, we have not been able to stop these tumors from growing. More specifically, my last MRI findings described it as an “extensive left central skull base enhancing mass compatible with meningiomas w/ similar involvement of the left orbit, middle cranial fossa, Para cavernous region, retroclival region, masticator space, and Sino nasal cavity”. This basically means the entire left side of my “head and eye orbit” are filled with brain tumors, Meningioma w/NF2 mutation (which is a cancerous gene), part of which is wrapped around the carotid artery in my left cavernous sinus area. Over the past 9 years I have undergone 14 surgeries, five of which have been brain surgeries to debulk the tumor in an attempt to buy me more time to help raise my kids.

These tumors have caused a great deal of loss and permanent damage in my life/health. I am currently partially deaf in my left ear, blind in my left eye (which causes poor depth perception), nerve damage (causing numbness to the entire left side of my head), chronic pain, Pituitary Gland imposed by tumor causing thyroid problems, and have some brain damage to the temporal lobe causing significant short term memory loss, word retrieval difficulties, easy confusion, balance issues, and sudden mood changes, to say the least. I have also been recently diagnosed as having Lupus w/APS! I was once a middle school teacher and private tutor with/former career as a drug/alcohol counselor. I excelled at my job and loved it so much I returned to work for 2 years after being disabled for a couple of years. Despite my attempt to work while dealing with this illness, I am now permanently and totally disabled.

You may be wondering why someone with a nine-year illness would need your help today. Well, the truth is due to several reasons. For starters, all my treatment has been out of state due to the critical care needed…no one in my state has ever agreed to treat my condition! This, in of itself, has created greater expenses for travel, lodging when needed, and my caregiver (my husband) always having to take time off work in order to take care of me and our kids. Second, which is the most frustrating and causes more pain/trouble than I ever imagined…disability income! Long story short, Social Security made mistakes with my payments more than once, causing me to have to pay back thousands of dollars to them and then to the state pension office & Hartford disability insurance, which I am still paying. In addition to that, my disability income just dropped $950.00 a month instantly! No transition or support was provided to help me prep for this massive change. So now I have 2 kids in college, am facing a surgery I really can’t afford financially (even with great health insurance I pay a lot for), and hubby & I can’t afford to pay all our household bills! To make matters worse, the money we had been saving to fix a major problem in our bathroom (leaking pipe, possible mold/mildew, lack of handicap railing, damaged shower from the ‘70s!), had to be used to pay bills this past summer and leaves me without a safe and usable bathroom in my bedroom post my next surgery. Last, but not least, I am struggling emotionally everyday as I am now faced with Depression, Anxiety, Anger, Fear, and Hopelessness, more days than not. I have been working very hard to adapt to this different/new way of life with a blind eye that is sewn shut, a strange appearance in my face, extreme fatigue/weakness, lightheadedness and loss of balance, etc. However, now I find myself torn between which road to take…do I undergo this surgery? If so, what do I do next? What if this surgery causes significant damage, leaving me unable to do what I do now just to get by?

Here’s the problem: throughout this surgery, the doctors will be permanently removing my left eye, the mesh implant that is there, debulking as much tumor as possible, and using flesh, arteries, and bone from my forearm and/or thigh to reconstruct the area of the left eye. I will probably not even have a normal left eyelid sewn shut, it may just be skin covering that area once healed (which will take several months). I may need more surgery for any corrections after healing, if not healed properly. The worst part is that I do not qualify for a prosthetic eye. If I want to have anything that looks like an eye there, I will have to undergo another surgery many months later to create a concave shape to the eye area so that they could provide an ocular prosthetic eye (kind of like the fake eye/skin/body parts you see movie makeup artists create!). I don’t know if I can adapt to seeing myself with a concave eye area, nor do I know anything about how having a fake slab of skin/eye would feel like, look like, or is cared for yet.

MY main goal is to at least succeed in removing my blind eye, that the tumor keeps attacking, and debulking as much tumor as possible, in an attempt to reduce the chances of the tumor reaching the right side of my head and/or causing me total blindness. I pray every day that I will be gifted with more quality time to spend with my hubby and children. Even though it is not my fault, God knows I feel guilty for causing them the pain to live with a chronically ill wife/mom, whose illness is incurable and can lead to a sudden death at anytime if not followed and treated regularly. Second to this, despite this tormenting illness, I am aiming to try and work as a substitute teacher/private tutor whenever possible to try and make a little money to ease our financial difficulties once I am healed. God willing, I will be able to complete this surgery with success, and with the right support, I will be able to reach these goals.

Please help me on this journey. I know many of us have suffered or are still struggling with the effects of the pandemic, but any monetary donation, along with your prayers and emotional support, would be GREATLY appreciated. Every dollar counts! Offering your support will make it possible for me to afford undergoing this surgery, continued treatment, and the months it will take to heal, before I can find a way to physically work and make some money to supplement my disability and pay our bills.

Thank you for taking the time to read my story. Please feel free to share with anyone through social media to help increase my chance of reaching these goals and spending more time with my family. Don’t hesitate to ask any questions you may have about this illness or brain tumors in general.